Building my life after the devastating effects of Necrotizing Fasciitis
(The Flesh Eating Bacteria)

Thursday, December 24, 2015

Life after intubation

Weird title, I know. I mean, intubation in and of itself isn't especially traumatic, unless it's done in a trauma situation, which my last surgery was not by any means. It is just a necessity of having surgery.

So why bother writing about it?
Well, seems that something happened in my throat during the intubation (or extubation when they take out the breathing tube) from my surgery two months ago.

Since the surgery I've had three symptoms which haven't gone away:
1. a very disturbing "click" in my throat EVERY time I swallow. Food, drink, saliva... every time, all day and night, whatever I swallow passes over some bump, I feel the bumpy road, and it makes a clicking noise. A million times a day. Annoying as hell.

2. a cough, inconsistent, but present, also all day. It's not a "sick" kind of cough, it just exists.

3. Loss of upper range of my singing/talking voice. Any sort of animated vocal inflections sometimes come out as just air, no sound. Again, inconsistent, but frustrating.

This has been going on for two months, since my surgery. I kept waiting for it to get better on it's own, and it isn't. Yesterday I finally went to an ENT to check it out.

He was excellent. Did some tests, one of which was using a fiber optic tiny camera to see my vocal cords & airway. Not a lovely feeling, but not painful. He said that aside from a little swelling on one side of my esophagus, it looks completely normal. He was looking for a ridge of cartilage out of place. He presumed he'd see that after hearing my symptoms. He had a few patients in his practice over the years who had that after an intubation. But he didn't see the signs he thought he'd see to diagnose it. (sounds like all the illnesses I've had- they mask themselves as nothing until they keep getting worse and become a big, nasty 'something').

He felt the click with his own hand on my throat. He heard it with a stethoscope on my throat (the sound is *much* more amplified for me because it is happening in my head). But yet he didn't see it with the fiber optic camera. He was puzzled.

He called a speech therapist who specializes in throat trauma. He called while I was there in his office, which I thought was very conscientious and caring of him. The speech therapist said he'd see me, and we made an appointment for Jan 3rd.

He wrote a referral for a few more tests. One is a swallow test, where you swallow things from thick to liquid in a slow succession and analyze each type of action. The other is some sort of imaging using radiation, but I forgot the name of it.

We talked for some time, the appointment was about an hour... *extremely* unusual for a doctor who isn't a psychiatrist, right? He told me about a guy who works in a hospital in Rechovot, about an hour away from me. This guy was trained by the Guru of Gurus in Boston. Well, it turns out that I actually was treated by that Guru of Gurus when I was having singing issues when I lived in Boston! Going back about 25 years, I was having problems of my upper vocal register getting airy and cut off while I was singing (I used to sing in a Jewish choir called "the Zamir Chorale of Boston"). This otolaryngologist I was referred to did a full work-up of my singing, and diagnosed polyps on my vocal cords. He offered to operate to remove them, but I never went through with the surgery. My horn playing was at the forefront of my career, and I couldn't take off time for a fairly trivial problem.

Well that budding vocal diagnostician became the most famous otolaryngologist on the planet over the next 20 years (his name is Dr. Steven Zeitels). So the guy in Rechovot is one of his most talented protegees. Interesting, right? My ENT tried to call him, also, while I was in his office, but that doctor didn't answer.

After the appointment I went home. As soon as I walked in the door, my cell phone rang. It was the ENT! I was quite surprised. He wanted to tell me that he was able to talk to the guy in Rechovot after I left. He explained the situation to him, and didn't have good news for me. That doctor said he has seen two patients over his career (-two-) with the exact same problem. It is extremely unusual, and it never went away. Never. went. away. My ENT said it may be one of those things that I'll have to get used to, like when someone has a ringing in their ear constantly has to get used to it. That did *not* make me happy in the slightest. Already my life is such that I have been forced to get used to pains and strange nerve events in my leg. These things come about, and I have learned to keep a straight face and incorporate it into the regular way I am. But this swallowing thing, it's *really* distracting. Everything I swallow trips over a bump on it's way down. And along with that pronounced feeling comes a sound, amplified in my head. May never go away? Good God, that is a depressing thought.

It's another Sarah Klein anomaly. One more thing to add to the strange and atypical medical occurrences in my life.

I'll do the recommended tests, and see that speech therapist in a few weeks and see where it leads me. My ENT (who I saw yesterday) said that it's not *definitely* irreparable, but I have to know that's a possibility.

In short... don't have surgery. Strange (sometimes awful) things happen, and if you can put up with the issue without operating on it, better to do that. Take my word for it. Weigh out your options carefully... shit happens. Take my word for it.

(I'll be off-line for a few days, going for a two day visit with my lovely sister-in-law in Modi'in, not bringing the laptop. My phone- with internet- is never too far from my reach, though. :)

I forgot to respond to this, Lee- cool that your son and Dr. Zeitel's sons are friends. I guess Zeitels was pretty young if he now has a kid in 4th grade. Well, I have a son in 4th grade and I'm not that young.... you have a son in 4th grade and you're not that young, either. :) I just have a picture of Dr. Zeitelsin my mind's eye, from the time he worked with me many moons ago, that he was quite a bit older than me. Well, perspective at age 23 or so is quite different than at 47, haha. And yes, my mother *did indeed* say last week on the phone "merry khrachtsmeir". I chuckled. Impressed that you remember that. Everyone with their idiosyncrasies that make then stand out in our lives, no matter how long ago. Makes the time feel like it was just recently, you know?Happy 2016. There, you are the first recipient of me writing that date for the first time. :)

I'm not so into the idea and science behind chiaropracty, but I wouldn't rule it out if it was suggested for a solid reason. Problem is now that we don't yet have a solid reason, or even a clear diagnosis. The ENT was looking for dislocated cartlidge and didn't see it upon first examination. Let's see where these other tests go, and I'll go from there.Thanks!

When things go wrong, of course we don't throw the baby out with the bath water.... I didn't mean by my closing remarks on the blog that I am sorry I did the surgery. I know it was my best alternative after going off pain meds. I was just stating clearly for anyone considering surgery to weigh it out many times (I had two years to weigh this out from the time of diagnosis, and the canceled surgery over a year ago, etc.)It is upsetting having this bumpy clicking thing in my throat, but I can live with it. I just don't want to. And yes my leg is less painful today than it was before surgery, and that is a Good Thing. Not discounting that. It's not pain-free, but I am hopeful that over the next few months it will be much more so.I never "forget" or discount what there is to be grateful for. I just report things as they happen.Just know that I am always aware, ALWAYS, of the blessings and goodness that has entered into my life at each stage of the way. :)

I have had the click! I was never intubated and I don't know where it came from, just noticed it one day, probably about 8 years ago? Lasted a long time and I thought I still had it until I read your post and tested it - no click! There's hope! In any case you do get used to it - like I said I stopped noticing it and I don't know when it left.

That's amazing. You don't know where it came from- that is so interesting. Did you ever go to an ENT to check it out?I hope I stop noticing it, but as of yet, is it my elephant in my throat. I'm happy I reminded you of it and got you to verify that it is gone. Gives me hope!XO

I may go for acupuncture and shiatsu. I know someone here who I have been learning Tai Chi with for a year or so, and his main practice is acupuncture and shiatsu. He's very skilled. I may go to him. I want to have these tests first to see if there is a real diagnosis or not.Keep doing your awesome work!XO

I am sorry to hear about your "throat clicking". I have had the same thing for two years after blunt trauma to the throat. Apparently the hyoid bone rides over the thyroid cartilage when I swallow. It's been two years, but I have not been able to get used to the sensation (this has made my life really miserable...), and I am seriously considering a surgery for it. There are experts for the condition at UCLA and U of Utah. http://ucdvoice.org/wp-content/uploads/2013/11/Clicking-in-the-throat.pdf

Not a great report, but appreciated always.I probably won't go to a practitioner in the US, living here as I do. I have a few people here to consult with, one who I am seeing tomorrow.I understand how it is almost impossible to get used to. That is where I'm at. I haven't been discussing it with anyone, because it becomes like a broken record after a while. I am waiting to see these docs and do the basic tests and see where it leads. I didn't have a blunt trauma, like you did, to the troat. I do wonder if the intubation (or extubation) was done carelessly,but there is no way for me to know that. I'm sure the anesthesiolgist's report is all normal. (although after all I've been through, and the lawsuit we just closed, I shouldn't be sure about anything reported on official reports...) Going now to check out the link you sent.Thanks!Sarah

Hi. I somehow assumed that you live in the US. Please excuse me for that. Another potential cause of throat clicking is dislocation of arytenoid cartilage, which seems to occur rarely with intubation. Please keep us posted. All the best!

Hoping for the best for you. Unfortunately not always possible to avoid surgery. Sometimes putting it off and waiting can make things worse so no decision is clear cut. You do what you think best and hope the doctors know their stuff.

About me and the blog

This blog is about the hard stuff that has happened to me since I got sick... very sick, in 2007. When you read it, please know also that there is lots and lots of GOOD, amazing, miraculous things in my life. I need this blog, however, to get out the hard stuff.
That hard stuff started out with a simple run-of-the-mill surgical procedure to fix a small hernia I had. I was completely healthy before that. Four days after the operation, I was readmitted to the hospital in tremendous pain. Nobody knew what was wrong, some nurses didn't even believe my pain was that bad. Tests were done, nothing was noticed. A few days later I was taken in for an exploratory surgery to see if the source of the problem could be identified.
The next thing I knew after going under for the exploratory surgery was that I woke up many days later, from a coma, completely unable to move my body or communicate.
I slowly learned that I almost died from the “flesh eating bacteria”, Necrotizing Fasciitis. I had suffered tremendous bodily damage, but survived.
From that point on, my life has been taken over by medical problems, more diseases, many more surgeries and so much pain.
When asked what I do, I say I am no longer able to work, but I am an orchestra musician, I play french horn, and I am a birth doula. Since 2008, however, I have not been able to work.
I am blessed to be able to raise my four beautiful children and continue life with my loving husband, Robert. That is indeed my life's work. When I got sick, I was 39, and my kids ranged in age from 1 + ½ to 7. It has been an amazing, tremendously difficult journey we have all been on. I invite you to randomly read blog entries from this blog, as well as the CaringBridge blog, which can be found on a button under this write-up.
I appreciate all your letters and feedback either personally or on my blog. The support and encouragement I feel from my readers is the fuel for my writing. I thank you for joining my journey!

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Getting from one side to the other is where we find the colorful part of living...

People, Places & Things

Robert= husband, friend, anchor, ezer k'negdo.

Dov= oldest child, boy variety

Ya'akov= 2nd child, also boy variety

Shifra= 3rd child, girl variety

Azriel (Wazi)= 4th child, again, boy variety

Emma= my dog. We adopted her while she was pregnant (how else does a dog get to Sarah?), she had her 7 puppies here in our garden, we raised them for 3 months, and then one-by-one gave them away to new homes. We have Emma with us now, a dearly beloved part of our family.

Gapey= the large (26cm x 13cm, or 11in. x 6in.) wound on my left upper thigh/lower belly/groin after the debridement surgery took out all skin layers, parts of muscle & ligament

Scrapey= the other wound; the area all around my right thigh where the skin was taken in rectangular patches for the graft which was used to close gapey.

Shapey= the odd shape on my left outer thigh which was caused by the cellulitis infection (March 2008). It is still damaged looking, and remains sore to the touch